Waiting on ED, How long ?

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Radical
Veteran Member


Date Joined Mar 2009
Total Posts : 739
   Posted 3/5/2009 1:29 PM (GMT -7)   
Can someone tell me the "norm" as to ED, I am 10 weeks out of surgery, and theres nothing happening!  I am taking 5ml cialis daily, and every 2-3 weeks I try a 20ml cialis to test for reaction.  Do I just keep at it, or should I begin something else, ie vac pump or similar.  Must admit dont really fancy injections.  Perhaps I am being impatient, help please !
 
Age 51yrs
DX 11/11/08
6 out of 8 cores positive 3 X 60% / 3 X 10%
PSA 4
Gleason 3+4=7
Stage T1c
Robitic Surgery 24/12/08
Upgrade Gleason 4+3=7
Margins Neg
Nodes Neg
Dry less than 1 week
ED- taking Meds/ No result yet
PSA 28/1/09 0.03
PSA 24/2/09 0.03


alex1
Regular Member


Date Joined May 2008
Total Posts : 29
   Posted 3/5/2009 1:43 PM (GMT -7)   
Rookey:

Welcome to the "club". As you will see as you stay with us, there is no "norm" regarding either continence issues or ED. It is not uncommon to go one or even two years without a huge improvement. It is, however, a matter of patience and therapy. Conventional wisdom says use pills, pumps and then (possibly) injections, and it will in most cases one day get better-mine has, but it took time and effort. Just remember, whatever the results, and however slowly they come, your situation far better than PCA.
58-year old attorney, no family history of PCa
Biopsy 12/29/2007 with 1 of thirteen samples positive; estimated 5% involvement
3+3=6 Gleason
TR2C Stage
RRLP on 2/21/2008 with excellent prognosis (no evidence;margins and other tissue clear) on cancer clearance and sparing of both nerve bundles
Post-OP:Actual involvement 15%, one lobe only; PCa fully contained in prostate-no involvement with other tissues and margins clear
Catheter out on 3/2/2008; fully continent by 3/31/2008
Undetectable PSA on 3/31/2008
Working on ED: 20MG Levitra every other day; Vacuum pump almost daily; some improvement, but not there yet. Started using MUSE with some success, 11/1/2008
2d undectable PSA on 7/21/2008
3d undectable PSA on 10/30/2008


Paul1959
Veteran Member


Date Joined Nov 2007
Total Posts : 598
   Posted 3/5/2009 2:09 PM (GMT -7)   
I think all guys should be told that this is a 12 to 18 month time frame. At one year, I noticed a strong improvement - i can now get an erection sometimes with no chemical help. Drugs make it better though - faster, less work, less worry. Most of the guys in my PCa support group agree that improvements are most noticeable after a year. One guy said that his ED went away after two years.

We all have our own timetable. Hearing stories of guys with virtually no ED is really misleading. Pump, JO, drugs, injections all help. Keep working at it. enjoy sex regularly - even with no intercourse - and things usually improve with time.

you should have check ups every three months for the first year. Be sure to talk to your doctor frankly about this. Some docs need to be pressed if you are not happy with progress.

paul
46 at Diagnosis.
Father died of Pca 4/07 at 86.
1/06 PSA 3.15
1/07 PSA 4.6 (Biopsy 3/07 just suspicious)
10/07 PSA 5.06 (Biopsy 11/07 1 of 12 with 8% involvment) (1mm)
Da Vinci surgery Jan 5, '08 at Mt. Sinai Hosp. NYC www.roboticoncology.com
Saved both nerve bundles.
Path Report: Stage T2cNxMx
-Gleason (3+3)6
-totally contained to prostate,
-10% involvement in L & R Mid lobes
PSA 0 at nine months.
Pad free on March 14 - (10 weeks.) Never a problem since.
ED - Took 100mg viagra every night. for several months
Totally usable erections at 10 weeks, which disappeared over the course of a month or two.
ED bounce is what they call it. Now, at one year, ED is fine with viagra.
One year PSA - undectable!


Bootheel
Regular Member


Date Joined Oct 2007
Total Posts : 300
   Posted 3/5/2009 2:26 PM (GMT -7)   
I think it is different for each person but I think 12 to 18 months is about the norm. I suggest using the VED and taking the ED meds. Injections help too. I'm finally getting results with the Viagra 13 months out. about 95% of what it used to be. I know it's hard to be patient but it will happen.
Age 65
Diagnosed 10/12/07
PSA 6.3
Biopsy 18 core samples, 2 positive <5%
Stage T1a Gleason 6 (3+3)
LRP  1/29/08
Post-op
Gleason 7 (3+4)
1 positive margin (.3cm)
T2C
4/16/08- Started Bi-mix injections 
5/15/08- 1st Post-Op PSA 0.07 Undetectable
8/11/08 -2nd Post-OP PSA 0.02 Undetectable
8/15/08- No more pads as of today  Whoopee!!!
11/13/08- 3rd post-op PSA 0.02 Undetectable
03/02/09- 1 yr. post-op PSA .09 Undetectable


JerseyG
Regular Member


Date Joined Feb 2009
Total Posts : 65
   Posted 3/5/2009 4:03 PM (GMT -7)   
Hey Rookey, like the other guys have told you, just be patient. I'm about 6 months out of surgery and I'm about 90% with cialis or viagra. I also just began to have numerous night time erections. There was slow and gradual improvement for the first 5 months then things started happening down there. I pop a cialis about twice a week to keep the blood flowing and I encourage the wife to help a couple of times a week and that's it for me. There is hope my friend.

Age now 44 (43 when dx)
 
Pre-op PSA:  0.9
Biopsy: 3/12 cores pos  20% 30% 50%
Gleason 3+3=6
Robotic RP:   Aug 08 1 day hospital stay, cath out on 8th day.
Post Surgery Pathology Report: Gleason 6, pT2c, tumor 10% contained in prostate gland, all margins negative. Negative lymph nodes
Post Op PSA: Dec 08 <0.1


CPA
Veteran Member


Date Joined Feb 2008
Total Posts : 655
   Posted 3/5/2009 4:17 PM (GMT -7)   

Greetings, Rookey.  It does take time - my doc told me to expect to deal with it for 2 years and anything less is just a blessing.  As I have said in other threads, I felt I was fortunate because I could get about 80% fairly quicky after the catheter was out.  I didn't take any of the meds for several weeks and found that I was regressing and certainly not getting any better.  My doc gave me samples of Levitra and Cialis and I took both as well as ordering a supply of the ADC version of Levitra.  I now take one of those 2 times a week right before bed and am basically 100% of presurgery whenever I need to be.  It does take a lot more manual stimulation but who's complaining. 

Take the meds, be patient, have a very loving and helpful partner and you will do great.  Patience is the key.  David


Age 55
Diagnosed Dec 2007 during annual routine physical
PSA doubled from previous year from 1.5 to 3.2
12 biopsies - 2 positive with 2 marginal
Gleason 3 + 3 = 6
RRP 4 Feb 08
Both nerves spared
Good pathology - no margins - all encapsulated - Gleason 4 + 3 = 7
Catheter out Feb 13 - wore pad for couple of days - pad free Feb 16
Great wife and family who take very good care of me


sandstorm
Regular Member


Date Joined Dec 2008
Total Posts : 194
   Posted 3/5/2009 6:45 PM (GMT -7)   
Almost 8 weeks out now Rookey and I do injections of trimix 3 times a week and pump every day that I am not injecting. My next injection date is Sunday and from my loving wife's passing comments, it may be my lucky day but I know it will be artificial in a sense. My surgeon was pleased when he heard I had a pump and was ready to begin with his OK. Perhaps one could benefit you. The Resource Center at the top of this forum is a world of information.

Have patience my friend and good things will come to you.
Age at DX 57
5-18-07 PSA 7.7
5-06-08 PSA 4.6  8% free psa, but stable
10-23-08 PSA 5.65 4% free psa
11-04-08 biopsy
11-11-08 2 of 12 cores positive
Gleason 3+3  6  stage t1c / post-op 3+4  7  stage t2c
CT and Bone scan negative
Da Vinci RRP 01-09-09
Catheter removed 1-15-09
Pathology Report says it's gone!
First Post-op PSA 2-17-09   0.00


apacker1950
Regular Member


Date Joined Nov 2008
Total Posts : 122
   Posted 3/6/2009 9:27 AM (GMT -7)   
Rookey, As stated previuosly there isn't a normal recovery time or even a guarantee that you will have a recovery from ED. I had a nerve sparing open RP in Nov. 05 and have never regained natural erections. I have, however, long since returned to an active love life with my wife of 36 years. I hope you regain erections naturally, but if not there are many options out there for you. The one that works for me is trimix.

Sandstorm, I hope you have a nice weekend. Artificial?? I never felt that. Different, yes, but it was certainly real and fulfilling to my wife and me. Besides, my wife never has to worry about me finishing before she does. Works out very well for both of us. Enjoy and remember to keep practicing. It only gets better.


Dx PCa age 54. Jly 05- PSA 8.1 Sept 05- PSA 10.7
Sept 05- Biopsy  9 of 12 cancerous, Gleason 3+3=6, T2
Bone scan and cat scan showed hot spot on hip bone.
Oct 05- bone biopsy, ouch.  benign , no cancer in bones.
Nov 05- PSA 15.4 Nov 18, 05- Nerve sparing open RP at Huntsman Cancer Center, by Dr. Robert Stevenson. 100% continence at 3 months. ED- Tried the big 3 pills with no results. Feb 06-Started VED, worked, but painful with constriction rings. May 06 started Trimix injections.
ED appears to be perminant but doing great with Trimix.

Post Edited (apacker1950) : 3/6/2009 9:30:31 AM (GMT-7)


Magaboo
Veteran Member


Date Joined Oct 2006
Total Posts : 1210
   Posted 3/6/2009 1:37 PM (GMT -7)   
Patience is the key word here! It took me the better part of 2 years to return to near normal (without meds). 8 - 12 month with the help of 50mg Sildenafil.
Some men are a little quicker, but I consider myself lucky.
Born Sept 1936
PSA 7.9
-ve DRE
Gleason's Score 3+4=7, 2 of 8 positive
open RP 28 Nov 06, Post op staging T3a
Gleasons still 3+4=7
Seminal vesicles and lymph nodes clear
Catheter out 15 Dec 06, Dry since 11 Feb 07
All PSA tests in 2007 (4) <.04
PSA tests in 2008: Mar.=.04; Jun.=.05; Sept.=.08; 3 days before Rad Start=0.1
Salvage RT completed (33 sessions - 66 Grays) on the 19th Dec., 08.
PSA on the 26 Jan., 09, =0.05. PSA tests now every 6 month


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 3/7/2009 9:27 AM (GMT -7)   
The more I read here of peoples experiences, the more I am feeling that it takes much longer than I previously thought. It seems that the "norm" is from 1 to 2 years. Or we longer guys are more willing to respond to the question....lol
James C. Age 62
Co-Moderator- Prostate Cancer Forum
4/07 PSA 7.6, referred to Urologist, recheck 6.7
7/07 Biopsy: 3 of 16 PCa, 5% involved, left lobe, GS 3/3=6
9/07 Nerve sparing open RRP- Path Report: GS 3+3=6 Stg. pT2c, 110gms, margins clear
16 mts: ED- 50 mg Viagra 3X week, pump daily,Trimix .35ml 2X week continues
PSA's: .04 each 3 months


56pontiac
Regular Member


Date Joined Sep 2006
Total Posts : 232
   Posted 3/7/2009 2:23 PM (GMT -7)   
Yes, it takes longer than they lead you to believe on recovering from this surgery. The doctors make it sound like it is routine no big deal surgery like having your tonsils out. Well maybe for the skilled surgeon it is just that simple. THIS IS A MAJOR SURGERY! It used to be one of the bloodiest. I also didn't want to do the shot and I didn't, I used the vacurect pump as therapy excercise. It took 10 months before a "natural without a pump or drugs" erection that would work for intercourse for me and then it didn't work for a few months. Now after two and half years things are working pretty normal once a week or so. I think for this 60 year old guy that is just fine. Remember you are not 25 years old anymore. Try to just chill out keep using the pump as therapy to increase the blood flow. If you are feeling some of the old throb even if it is faint it will improve. It is just going to take some time. Hang in there and the thang will start look up. yeah

Post Edited (56pontiac) : 3/7/2009 2:26:23 PM (GMT-7)


spisam
Regular Member


Date Joined Jan 2009
Total Posts : 47
   Posted 3/7/2009 4:10 PM (GMT -7)   

A friend an I had robotic surgery two weeks apart by the same surgeon. Mine was Jan 6,2009. His was two weeks earlier. I began having erections within two weeks but I still leak. I'm down to two pads a day. He has been dry from the get go but is totally impotent. We both need to be patient. As you can see it varies from person to person. Hang in there.

Sam 


Sam Benton
Regular Member


Date Joined Dec 2008
Total Posts : 35
   Posted 3/8/2009 3:46 AM (GMT -7)   

Hi Rookey,

I had robotic on November3,2008 and I still suffer from ED. I am using meds daily, the pump 3 times a week  and injections for intercourse. I didn't think I would be able to do the injections but eventually the need took over and I did.  I just talked to my doctors nurse a few days ago, because I was beginning to wonder when I would see some results of the meds and she reminded me that it can take the full 2 years to have natual erections again. I needed some reassurance that I was on the right track. The point she made was that I need to continue the meds & pump or I may never have natural erections again. It seems to be very different for each of us, but we need to stick to the routine and wait it out. I have lowered my expectations a littlet to fit the 2 year time frame, but like most of us it is our mission in life to gain our natural erections back,and I'm sure we will all keep working at it. Do yourself a favor though, take the time to grieve a little for something you have lost, that ability to get it up whenever you  wanted to, it is tough and my wife keeps reminding me, it is difficlut to lose something that has been such an important part of my life. We've been married for 34 years and she has always been the patient one.

Sam Benton

 

 


Piano
Veteran Member


Date Joined Apr 2008
Total Posts : 847
   Posted 3/8/2009 9:15 PM (GMT -7)   
It's a year now since my non-nerve-sparing RRP. I still have a complete flat-tire with no hint of natural erections. However bimix injections continue to give consistent results (twice weekly if I'm lucky!), and I pump a little, perhaps also once or twice a week. Good results there too, but not for intercourse.

Intercourse has to be planned much more than before, so the spontaneity is gone. But the plus side is that I last a lot longer and if anything, orgasm is more intense.

I'm hopeful to see some recovery of natural erections this year, even though statistically in my case I know it is unlikely. I accept my lot. I am still cancer free, continent, and figure that even if I have to spend the rest of my days on injections, it's not so bad.
Age 63. Other than cancer, in good health; BMI 20
Pre-op: No symptoms; PSA 5.7; Gleason 4+5=9; cancer in 4 of 12 cores
7 March 2008, RRP, non nerve sparing
Two nights in hospital; catheter and staples out after 7 days
Continent, no pads needed from the get-go
Post Op: Stage pT2 M- N-; clear margins and lymph nodes; Gleason 4+4=8; prostate weight: 37gm
6-week and 7-month PSAs: 0
Bimix injections working well 


Roger G
Regular Member


Date Joined Apr 2008
Total Posts : 150
   Posted 3/9/2009 6:23 AM (GMT -7)   
As others have said patience is a virtue. 
 
I'm just shy of the 18 month mark, and am only now starting to see some life in the little (an I stress little now) bugger.  I waking up at 2am from a strange sensation... a little wood idea .
 
Maybe in another 3 to 4 months i will be usable and controllable tongue .
Age: 43 (2008)
DRE Small Ridge on prostate, PSA 1.5
07/2007: Diagnosed cancer, T2c, Gleason 3+4=7
09/2007: Laparoscopic prostectomy @ Hamilton General, 4 hrs.
01/2008: Still working on ED.
 
 

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